Celiac Rant: Growing Up with Celiac Disease…and Hating It

growing up with celiac disease

I have a laundry list of celiac rants that people have sent me to post still. But I got the below email this morning and it struck a chord with me. It always pains me a bit extra when I hear from young people. And makes me realize how lucky I’ve had it.

I got diagnosed with celiac disease when I was in my early 40’s. Yeah…it sucked. Yeah…it was overwhelming. Yeah…I hated giving up all of the food I grew up on and loved. But I was an adult. Sh*t happens. You adjust. You move forward.

But what’s it like when you’ve had the disease pretty much all of your life? When you really don’t remember the pre-celiac days? Since you don’t know any other life, is this just your “normal” life? Or does the disease still hit you in ways you abhor?

Here is one teen’s experience:

I’m still a teen. I was born that way. I never suffered the way you suffered; my body never hurt, my life didn’t change. Because I don’t remember. I just know nothing before this. Only the fat white bread I used to love. But that’s not the only thing I’ve missed.

Leaving the white bread behind, I was only three and already gluten free, and I didn’t understand. I had not to eat the beautiful, colorful, happy things everybody ate. I couldn’t take what I was given by my friends. I couldn’t even eat the butter caramel I so cried about. And I was the only one.

At the parties, I had to bring my own sweet from home. At the school trips, I had to carry a bag with my own food in it. For two, three or four days, no matter how long it lasted, I could never eat what THEY ate, only what I COULD eat. I had never the choice.

I had to pretend I knew the taste of the things they talked about. If they talked about sausages, or Mars bars, or different kinds of chocolate, or the ice cream shop in the corner, I had to pretend that I knew and understood, though I didn’t even know the taste. Cause I never get to try them. I can only agree with my friends that sausages are tasteless. I have to agree that that pizza is good, but actually I have only eaten “the pizza mommy makes”.

And now comes the worst. Me and my friends start going out. Where can we go? Where can I not have to explain them I cannot eat what they want? How many other invitations do I have to turn down? How many times do I have to go to a party eating a sandwich I brought from home? How many times will they ask me why I don’t buy anything from the cafeteria school bar?

Because I can’t. I just can’t.

I am different from you, you are different from me. You can have a cold chocolate drink with little pieces of cookies and whipping cream and vanilla mocha topping or I don’t know what. I have to ask first what they put in that and what it is made from. I have to end up taking a fresh fruit juice, because who knows what there will be in that “milk mixture” or what will be in those proteins of the chocolate bar.

I have no choice. I can never be “cool”. I will be the girl who brings food from home and doesn’t eat your treats, the girl that goes to the pizza party with her own pizza in the backpack.

Thanks for making me different, celiac disease. But I just want to be like everyone else. And I want to have chocolate drinks with whipping cream and biscuits and vanilla mocha toppings.

Thanks for listening.

Hey there my fellow celiac. It’s me…Gluten Dude. As I said in my email response this morning, I feel your pain and I’m so sorry. I know it can feel like you are totally alone with your disease. Please know there is a whole community out there that deals with the same feelings that you are feeling.

You did not mention if your friends support you or make you feel bad about it. I am hoping they have your back. And it seems like you have parents who love you and will do anything to keep you healthy. If so, consider yourself blessed. I’ve received tons of emails from young people who have zero support from their family and friends and make them feel like a total inconvenience.

I won’t try to pretend that I know what it’s like to grow up with celiac disease. Just know that if it ever gets the best of you, I’m an email away.

Fyi…you’re totally “cool”. Don’t ever forget that.

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3 thoughts on “Celiac Rant: Growing Up with Celiac Disease…and Hating It”

  1. Dang! We keep kosher (I keep having to explain at work that, no, I’m not going to the farewell lunch) and one of my kids has celiac. That child remembers pizza. Mine isn’t as good (I’m told, I think it’s better, but hey, I’m not the one with celiac). That child is adjusting. They have pizza Friday at school. It is HARD.

    It doesn’t matter how many Udi’s chocolate muffins I send. It is still hard. But I will send them. And bake GF cookies. And when it’s our turn to take snacks, you bet it will be GF stuff.

    But… I also know that my other child had a severely food allergic kid in class. When I brought in home-made rolls (no celiacs in that class) it was the ONLY treat the whole year that kid could eat.

    When the celiac gets us down, I try to remember that. It’s not just celiac. There are people who are allergic to chocolate (and I told my allergist that I would refuse such a diagnosis). Or milk. Or soy (do you know how much stuff has soy???).

    It’s still hard.

  2. My grandson is 17 was diagnosed with celiac this past summer.
    I feel bad that he doesnt feel like eating for much of the day. At that age most teens are eating you out of house and home. Some days he hardly eats anything.
    When he was small he loved golash and would have seconds. Also liked grilled cheese. He does try pizza but doesnt eat all the crust.
    I just feel really bad he doesn’t eat. Don’t know how he can go all day till after school and not eat.
    Sometimes in the morning he does have deli meat, but that is only twice a week.
    Any tips on how I can be mote positive for him?

  3. hi Sharon,
    I kinda know what your grandson is going through, I was diagnosed when I was a teenager too. Just try and understand where hes coming from, if hes anything like me food made him feel sick, it hurt and made everything more difficult. Even after being diagnosed food can still hurt and it’s really easy to start viewing it as an enemy.
    My advice is to give him time to heal both physically and mentally, Don’t make him feel pressured to eat. And keep foods that he can eats and are easier to snack on around. Sooner or later his appetite will return.

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I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

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